November 21, 2017

Six-year-old Molly Malinsky and her parents have a lot to be grateful for this holiday season. After their daughter was diagnosed with a seizure disorder at four months old, Molly is now seizure free, a miraculous outcome that her family credits to Texas Children’s world-class neuroscience team.

When the Malinskys learned that their daughter’s physician Dr. James Riviello – who had treated Molly since she was four months old – joined Texas Children’s as the associate section head for Epilepsy, Neurophysiology and Neocritical Care, it was a no brainer for the New Jersey family to travel to Houston to reunite with Riviello.

“Dr. Riviello is one of those amazing doctors who is not only knowledgeable, well respected and professional, but above all, cares deeply about his patients and their families,” Rebecca Malinsky said. “We followed Dr. Riviello from NYU to Columbia and now to Texas Children’s so our daughter would continue to receive the best care.”

When Molly was first diagnosed with epilepsy, she was prescribed seizure medication which seemed to work. Molly had no seizures for over a year, but when she was weaned off of her medication, Molly’s seizures returned. “The seizures were getting worse and more frequent,” Malinsky said. “My daughter would have 15 seizures in an hour and three to five seizures at school even when she was back on her medication, which was very scary.”

After five failed medication trials, the only option remaining for Molly was brain surgery. After her parents met with Riviello, Chief of Neurosurgery Dr. Howard Weiner, and neurosurgeon Dr. Daniel Curry to discuss Molly’s treatment plan, the team determined Molly would be a good candidate for brain surgery.

On October 26, 2017, Molly underwent laser ablation surgery, a minimally invasive procedure pioneered by neurosurgeons at Texas Children’s that uses an MRI-guided laser probe to identify and destroy lesions deep in the brain that cause seizures. As the first hospital to perform laser ablation surgery in 2010, Texas Children’s has performed more than 150 of these surgeries, making it possible to treat some of the toughest cases of epilepsy, and put the brakes on damaging seizures.

“The results are very diagnosis and patient specific,” said Curry, director of Pediatric Surgical Epilepsy and Functional Neurosurgery, who pioneered and performed the laser ablation surgery on Molly. “But for something like hypothalamic hamartoma, a particularly difficult disease to treat, it has taken success rates in curing the child’s seizures from under 50 percent to about 80 to 90 percent, so it’s been a significant change.”

MRI-guided laser ablation has not only increased the safety of epilepsy surgery, especially in cases where the targets are far from the surface of the brain, but has drastically improved recovery time. Many children go home the next day after surgery, seizure free. For Molly’s parents, their daughter’s outcome is truly remarkable.

“Since Molly’s surgery almost a month ago, she has not had a single seizure,” Malinsky said. “Her behavior has improved, her ability to learn and retain information at school has returned. Our daughter was able to go trick or treating for Halloween just four days after her brain surgery, which was pretty amazing.”

The Malinskys will return to Texas Children’s in February for Molly’s three-month followup. Meanwhile, they are grateful to Drs. Riviello, Curry and Weiner, and the hospital’s entire neurology and neurosurgery teams for the exceptional level of care, compassion, professionalism and teamwork they delivered to their daughter.

“Between our first visit to Texas Children’s in August and Molly’s surgery, everyone treated our daughter with compassion and offered ways to be helpful in the immediate and distant future as Molly’s treatment plan began to unfold,” Malinksy said. “I could not imagine this journey without the shared and genuine support of Texas Children’s amazing Neurology and Neurosurgery teams. Clearly, you have recruited the best doctors in the country.”

Click here to learn more about Texas Children’s Comprehensive Epilepsy Program and laser ablation surgery.

Hundreds of Texas Children’s supporters attended The Forum Luncheon in Houston on November 13. Hosted by The Development Department, the event focused on the success of the Texas Children’s Cancer Center and featured stories from two cancer survivors as well as an in-depth conversation between Cancer Center Director Dr. David Poplack and Fox 26 Morning News Co-Anchor Melissa Wilson.

Poplack’s conversation with Wilson illustrated how far the Cancer Center has come in helping children with cancer, growing from six faculty, 42 employees, one laboratory and less than $300,000 in grant funding when Poplack joined the center in 1993 to a center that now has 190 faculty, more than 900 employees, 46 laboratories and about $40 million a year in peer reviewed grant funding.

“We have become the largest and we believe the finest children’s cancer program in the country,” Poplack said. “Through our many research advances, our development of exciting, effective, new therapies and most recently through our burgeoning global program, we are having a far-reaching impact on the field.”

Poplack emphasized the need for children to be treated in children’s hospitals like Texas Children’s, which has expert multi-disciplinary teams equipped to tend to all aspects of a child’s care. As the largest pediatric cancer center in the U.S., we provide individualized, state-of-the-art medical treatment for patients with childhood cancer, he said.

“Treating children from more than 35 states and 26 countries, we aim to provide the most family-centered, advanced care available,” Poplack added. “In addition to continued excellence and leadership in treating all forms of pediatric cancer, we continue to expand and grow to better serve our patients.”

Poplack stressed that even with dramatic improvements in treating children with cancer – increasing the survival rate from 20 percent to 80 percent – the disease still is the leading cause of death from disease in children in the nation.

That’s why Texas Children’s Cancer Center is vigilant in its research efforts, especially in the areas of developmental therapeutics, precision oncology and cell therapy and immunotherapy.

“We are dedicated to developing effective treatments for the 20 percent of childhood cancers that are most difficult to treat,” he said. “We won’t quit until we find a cure, and even then, we will move forward to find better ways to help fulfill the long-term needs of childhood cancer survivors.”

November 14, 2017

For more than a decade, the Purple Songs Can Fly recording studio at Main Campus has offered a place for cancer patients and patients with blood disorders to express how they feel about their disease and the treatments they are undergoing to battle it. Siblings of such patients also are able to use the studio.

Thousands of songs have been written and produced in the colorful space sandwiched between clinic rooms on the 14th floor of the Texas Children’s Cancer and Hematology Centers. Now, a similar space is available to cancer and hematology patients cared for at Texas Children’s Hospital West Campus.

“Today, we’ve cut the ribbon on our second Purple Songs Can Fly recording studio,” said Purple Songs Can Fly Founder and Executive Director Anita Kruse. “We’ve had a studio at Main Campus since 2006 and now we’ve opened one at West Campus.”

Thanks to support from the Texas Commission on the Arts and the Children’s Fund, Kruse has been coming out to West Campus for two years with a portable recording studio, working with patients at their bedside, in clinic rooms or conference rooms to write and produce nearly 100 songs.

“This pilot project proved that a permanent recording studio would be a viable investment at West Campus, Kruse said. “The children were really excited about writing songs here. I feel that the studio and the songs that will be written at West Campus will bring a lot of joy to the families and the children who are here undergoing treatment.”

West Campus Texas Children’s Cancer and Hematology Centers Nurse Manager Judy Holloway said the transformation and the impact that Purple Songs Can Fly has on patients, families and staff is remarkable.

“We see miracles happen in the Cancer and Hematology Centers here at West Campus and this studio is a miracle in itself,” Holloway said. “A lot of our children are very sick. Having this available to them here at West Campus is a true blessing.”

Annalisa Cuano, a singer, songwriter and highly trained sound engineer, will manage the recording studio at West Campus. She has been working with Purple Songs Can Fly for two years at Main Campus and has recently spent a lot of her time at West Campus getting the studio ready for its official opening.

“The goal is to get these children out of their heads and able to share who they are and what they are going through in the purple space,” Cuano said. “It’s really incredible to watch. There’s some kind of self-fulfillment or self-validation when you give them their CD.”

Kruse said she is grateful to everyone at Texas Children’s who has helped make the West Campus studio become a reality and is thankful for the funds she received to build and staff the studio. Texas Children’s West Campus Child Life Department supported the build out of the space to prepare it for construction and grants from the Children’s Fund provided funding for the construction of the studio, paid for all of the equipment inside the studio and helped staff the studio for a year.

Carol Herron, coordinator of the Periwinkle Arts In Medicine Program, said she looks forward to hearing the music and seeing the smiles on the faces of the composers at the West Campus Purple Songs Can Fly studio.

“What you do makes a difference in the day of a child undergoing treatment of a serious disease,” Herron said to those involved in Purple Songs Can Fly. “Thank you for the gift you give to these families.”

November 7, 2017

Texas Children’s has a new website that recognizes the outstanding accomplishments and successes of our team of more than 3,000 nurses across the organization.

In collaboration with Nursing, Texas Children’s Creative Services team member Bilal Tawil designed the website that includes a welcome video with Chief Nursing Officer Mary Jo Andre and features compelling articles, pictures, videos and animated graphics that spotlight how our nurses have gone above and beyond to spearhead system-wide initiatives to improve patient care, safety and outcomes.

Prior to the website’s launch, Texas Children’s Nursing Outcomes Book was a printed publication that was distributed internally and mailed out to thousands of our health care peers including chief nursing officers of pediatric hospitals across the country and deans from U.S. News’ top 10 nursing schools.

Through this new digital communications platform, website page views can be measured easily and nursing stories and data can be updated more frequently. The site also provides another tool for nursing engagement that complements the Voice of Nursing blog, which was launched in 2014.

Each section of the site – our stories, milestones and awards – demonstrates our nursing team’s continued dedication and hard work, their leadership, and the compassion that goes into the work they do for our patients and families at Texas Children’s each and every day.

Read all about our nursing team’s achievements at www.texaschildrens.org/nursing. Share the link with friends and colleagues, and encourage them to do the same.

Physicians, administrators, former patients and community partners came together at Third Coast restaurant on October 5 for the 5th Annual Transition Medicine Reception.

The event served as an opportunity to discuss the long-term care of Texas Children’s patients and welcome a number of attendees of the 18th annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult Based Care, led by Dr. Albert Hergenroeder, Chief of Adolescent & Sports Medicine. Additionally, the 2017 Benjamin B. Ligums Scholar Award was presented to Dr. Mark W. Stephenson and his Conroe dental practice for his success in following special needs patients through the continuum of care.

The “Transition Medicine Road Trip” took attendees on a journey to the various components of the transition medicine process, with Texas Children’s employees, physicians and former patients at stations talking to attendees about: parent/guardian engagement, patient engagement, partnerships with adult providers, patient education, and technology.

A number of former patients, along with their families were also present to share their personal accounts and experience transitioning from Texas Children’s to adult providers. Stories reflected a wide range of challenges and opportunities that serve as a resource for improving the transition process.

Attendees also participated in a silent auction to score items ranging from Houston Texans items to work from local artists. All funds raised will be used to allot grants for future transition medicine pilots to grow and develop programs and help usher patients into the world of adult care.

October 10, 2017

Three years ago, Texas Children’s Hospital West Campus opened an eight-bed Pediatric Intensive Care Unit thanks to a generous $1 million donation by the Lauren and Lara Camillo family. On October 9, the last chunk of a $50 million capital improvement effort expanded the unit to 22 beds, providing Texas Children’s West Campus and the entire Texas Children’s system with an opportunity to serve more patients and families that need our care.

“This is a huge milestone for West Campus,” said Executive Vice President Michelle Riley-Brown at a ribbon cutting event and celebration. “Our staff has worked tirelessly on this project and the reward of being able to offer more to our patients and families is well worth it.”

Initially, 16 of the beds will be used for intensive care and six will be for acute care. Two of the intensive care beds have negative pressure capability and can be used for isolation. All of the beds provide more privacy for our patients and families, as well as better visibility and workflow for our nurses and other medical staff.

Located on the fourth floor of the hospital and painted in calming pastels, the unit expansion includes two large nursing stations, an advanced practice provider workspace, a simulation room, nutrition room, lactation room, call room and conference space.

The patient rooms are spacious and have a private bathroom and seating/sleep area for family. The rooms are lined with windows that face outside, letting in sunlight and allowing for great views of the hospital grounds and surrounding community. And, sliding doors permit visibility and quickly allow the care team access to the patient to address any emergency.

Equipment in the rooms and on the floor is robust and includes two blood gas machines for respiratory therapy and additional nurse station monitors. In the future, some of the rooms will be able to offer patients who need dialysis the capability of doing so from the comfort of their beds.

“When West Campus first opened, we thought we would be a stopover for patients waiting to be transferred to Main Campus, but that’s not the case, especially now with our expanded capacity,” said PICU Medical Director Dr. Matthew Pesek. “We have the ability to treat just about any patient who comes our way, no matter how complex.”

Karen Sripan, assistant clinical director of the PICU, agreed and said the planning and design of the PICU expansion began in March 2016 and was comprehensive with the goal of having an environment that allows the PICU staff to do more for their patients.

“We were very thoughtful in our design and engaged staff throughout the entire process,” Sripan said. “We also were mindful of ensuring room design consistency with the Woodlands PICU so that the layout of the rooms are familiar to staff and providers working at both campuses.”

Dr. Hsiao-Tuan Chao received the 2017 Outstanding Junior Member Award from the Child Neurology Society for her discovery of the genetic cause of a neurodevelopmental condition known as the Hypotonia Ataxia and Developmental Disorder Syndrome.

Chao is the clinical instructor in pediatric neurology at Baylor College of Medicine and physician-scientist at the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children’s in the laboratory of Dr. Hugo J. Bellen.

Through large-scale collaborative efforts with the Undiagnosed Diseases Network (UDN) and Baylor Genetics Laboratory (BGL), Chao’s research studies revealed the pathogenic role of damaging genetic changes in Early B-Cell Factor 3 (EBF3) in neurodevelopment and cognition. Her research continues to focus on elucidating the role of EBF3 dysfunction and transcriptional dysregulation of neural circuits in highly prevalent childhood disorders such as intellectual disability and autism spectrum disorder.

Dr. Davut Pehlivan, a medical resident in pediatric neurology and physician-scientist at Baylor College of Medicine in the laboratory of Dr. James Lupski, is the recipient of the 2017 M. Richard KoenigsBerger Scholarship Award from the Child Neurology Society for his studies related to arthrogryposis patients.

Pehlivan analyzed 108 arthrogryposis families using whole exam sequencing approach as part of Baylor-Hopkins Center for Mendelian Genomics initiative. His studies made important contributions to understanding the disease pathogenesis by showing evidence for oligogenic inheritance in arthrogryposis and yielded several novel genes causing arthrogryposis.

The Child Neurology Society established this scholarship award in 2013 to honor the memory of . The awardee is selected between CNS Junior Members/residents submitting the best abstract in the areas of neonatal neurology, genetic diseases, HIV or metabolic disorders.